That's how I am feeling right now about my current anti-seizure medication. I am pretty sure I might be having breakthrough seizures, and meanwhile the side effects are still just as bad as they always were...so I am back to square one. F*?! I was this bad before the damn medication. Curse you Keppra! Curse you!!
Meanwhile, I am not doing my 72 hour EEG until the end of September because I don't have time to be hooked to an outlet for what works out to essentially four days once all is said and done. And I don't think the epileptologist wants to play around with my meds until it is done. Though maybe she'd get a better picture if I was off all meds for the EEG. But could I survive? I heard once you go off meds, the seizures get worse than they were before you were on them.
The doc said the goal of meds was to make me feel better not worse. It's time I started feeling better.
Oh F*! It's so dang frustrating. So hop over to the blog of Hopalong. She put music on her blog. The first song is my new theme song: "While You Were Sleeping" by Elvis Perkins. Like I wasn't already sleeping too much before I went on the meds. The singer hadn't intended this to be a theme song for the life of a girl taking Keppra. Clearly there is a deep meaning to the song. But all I can think is that while I was sleeping my babies grew and the money died and there was silence when the kitchen sang. This really, really wasn't the intended meaning of this song. Far from it. Sad.
while you were sleeping
the babies grew
the stars shined and the shadows moved
time flew,
the phone rang
there was a silence when the kitchen sang
its songs competed like kids for space
we stared for hours in our maker's face
they gave us picks
said go mine the sun
and go gold and come back when you're done
while you were sleeping
you tossed, you turned
you rolled your eyes as the world burned
the heavens fell, the earth quaked
i thought you must be, but you weren't awake
no, you were sleeping
you ignored the sun
you grew your power garden
for your little ones
and you found brides for them on christmas eve
they hung young cain from the adam trees
and danced while you were sleeping
i tossed and i turned til i closed my eyes
but the future burned through the planet
turned a hair gray as i relived the day
while you were sleeping
the money died
machines were harmless and the earth sighed
through the wind you slept sound
and gravity caught my love
around the ocean rose, sang about decay
while witches flew
and the mermaids stayed full of dreams,
you overslept and keeping with quiet,
through the walls i crept
i walked on tiptoe,
sent darkness swirling over all the kitchen in the early morning
i'll never catch up to you
who sleeps so sound
my arms are useless
my heart beats too loud to go to sleep
my mind's too proud to bow out
while you were sleeping
the time changed
all your things were rearranged your vampire mirrors face to face
they saw forever out into space
and found you dreaming in black and white
while it rained in all the colors of the night
i watched the tvs memories
championships vanished to sea
could it be, my honey between you and me
so i waited for the riddled sky
to be solved again by sunrise
and i've made a death suit for life
for my father's ill widowed wife
did you have that strangest dream
before you woke
cuz in your gown you had the butterfly stroke
did it escape you like some half told joke?
when you reached for your plume of smoke
it'll haunt you, my honey bee
anyone who is anyone has that same dream
were you falling
were you flyingand
were you calling out
or were you dying
thank god you're up now
let's stay that way
else there'll be no mornings
and no more days
cuz when we're dreaming
our babies grow
the sun shines
and the shadows flow
time flies
the phone rings
there is a silence
and everybody tries to sing
Showing posts with label Medications. Show all posts
Showing posts with label Medications. Show all posts
Wednesday, August 13, 2008
Monday, July 21, 2008
And a Little Something From Children Around the Nation ;)
Study: Most Children Strongly Opposed To Children�s Healthcare
Is this the kind of thing only those of us whose children have had more than their fair share of medical care will find funny?!
Tuesday, July 8, 2008
Tears of Recognition
I saw a seizure specialist for the first time today. It was a fiasco getting there. The hospital was completely disorganized, and the right hand did not know what the left was doing. I was sent to three different locations (in two different buildings)-- and had an inquiry by my name placed in two different computers by two different hospital staff people-- before finally being sent to the correct location for the seizure clinic.
The clinic is part of Harvard Medical School. For a good portion of my young adulthood, I wanted to attend Harvard Medical School. Life meanwhile took another direction. It was odd now to be driving past the school as a patient, and to have (presumably) one of its students (a resident perhaps?) conduct my patient interview and physical exam.
After finishing the interview and the exam, this doctor-- who I will call the "interview doctor"-- left the room, and he came back about ten or fifteen minutes later with the doctor to whom I'd originally been referred, who I will call the "recommendations doctor." She made the recommendations for next steps.
Basically, there are two things the "recommendations doctor" would like to do, to get a better understanding of what is happening in my brain. First, she would like to send me home with a portable EEG unit that I will keep on for 48 hours. During this time, it will take intermittent recordings. G. can also turn it on to do a recording if she feels I am spacing out. This provides a panaromic view of the electrical activity in my brain. The EEG I had done a while back was only a snapshot, and although it came back abnormal, provides little information.
The other thing the "recommendations doctor" would like to do is a high resolution MRI. Though the MRI I recently had been done was with contrast dye, giving us a good amount of information, the high resolution MRI will give us even more information.
The "recommendations doctor" explained to me that she is guessing I am having seizures that are impacting a large part of my brain, or indeed the whole thing. My symptoms would be more localized if the seizures were more localized.
When she first came into the room, the "recommendations doctor" asked me some clarifying timeline questions. Since my memory has been impacted in the course of my symptoms, the timeline had been difficult for me in the first place. But basically what I explained to the "interview doctor" was that I don't remember being especially symptomatic until maybe about five years ago. It has gotten slowly but progressively worse since then, and only within the last year or year and and a half was it bad enough that G. was alarmed to the point of forcing my hand so that I would see a doctor.
The clarifying questions were interesting. The "recommendations doctor" was able to use certain periods of time (for example, classes I took in high school) to help me create a better timeline. It was during that conversation when I remembered some experiences in school from early childhood. They may have been early symptoms. Tears began streaming down my face as the memories poured in. For years, those memories were markers of low academic self-esteem. Suddenly, those memories were also transformed into potential markers of a seizure disorder.
I was overcome by the need to apologize to the doctors for my tears. I felt so silly, sitting there in the clinic crying as I remembered little hardships about being a young student. The "recommendations doctor" let me know it was okay to cry. She said, "It seems to me we get a lot of tears around here. I think they are tears of recognition." Indeed.
She said that the seizures can go unnoticed for years and years even if they occur for say, as long as 30 or 45 seconds. She said she felt like intelligence could make up for large chunks of missing time. The brain just does double-time. I guess she was saying I am smart ;-). But this gets challenging as we get older, she explained, because our brains end up doing more multi-tasking as we balance our jobs and our families, and so forth. When we are younger and more focused on something like school, we have more reserves for a brain doing double duty. I don't have that luxury now, which may be why things are progressing and I was finally pushed to see a neurologist. Apparently, this isn't rare.
I had been thinking about my case as a "new(ish) onset" of seizures. Hmmm.
What an interesting day it has been.
The clinic is part of Harvard Medical School. For a good portion of my young adulthood, I wanted to attend Harvard Medical School. Life meanwhile took another direction. It was odd now to be driving past the school as a patient, and to have (presumably) one of its students (a resident perhaps?) conduct my patient interview and physical exam.
After finishing the interview and the exam, this doctor-- who I will call the "interview doctor"-- left the room, and he came back about ten or fifteen minutes later with the doctor to whom I'd originally been referred, who I will call the "recommendations doctor." She made the recommendations for next steps.
Basically, there are two things the "recommendations doctor" would like to do, to get a better understanding of what is happening in my brain. First, she would like to send me home with a portable EEG unit that I will keep on for 48 hours. During this time, it will take intermittent recordings. G. can also turn it on to do a recording if she feels I am spacing out. This provides a panaromic view of the electrical activity in my brain. The EEG I had done a while back was only a snapshot, and although it came back abnormal, provides little information.
The other thing the "recommendations doctor" would like to do is a high resolution MRI. Though the MRI I recently had been done was with contrast dye, giving us a good amount of information, the high resolution MRI will give us even more information.
The "recommendations doctor" explained to me that she is guessing I am having seizures that are impacting a large part of my brain, or indeed the whole thing. My symptoms would be more localized if the seizures were more localized.
When she first came into the room, the "recommendations doctor" asked me some clarifying timeline questions. Since my memory has been impacted in the course of my symptoms, the timeline had been difficult for me in the first place. But basically what I explained to the "interview doctor" was that I don't remember being especially symptomatic until maybe about five years ago. It has gotten slowly but progressively worse since then, and only within the last year or year and and a half was it bad enough that G. was alarmed to the point of forcing my hand so that I would see a doctor.
The clarifying questions were interesting. The "recommendations doctor" was able to use certain periods of time (for example, classes I took in high school) to help me create a better timeline. It was during that conversation when I remembered some experiences in school from early childhood. They may have been early symptoms. Tears began streaming down my face as the memories poured in. For years, those memories were markers of low academic self-esteem. Suddenly, those memories were also transformed into potential markers of a seizure disorder.
I was overcome by the need to apologize to the doctors for my tears. I felt so silly, sitting there in the clinic crying as I remembered little hardships about being a young student. The "recommendations doctor" let me know it was okay to cry. She said, "It seems to me we get a lot of tears around here. I think they are tears of recognition." Indeed.
She said that the seizures can go unnoticed for years and years even if they occur for say, as long as 30 or 45 seconds. She said she felt like intelligence could make up for large chunks of missing time. The brain just does double-time. I guess she was saying I am smart ;-). But this gets challenging as we get older, she explained, because our brains end up doing more multi-tasking as we balance our jobs and our families, and so forth. When we are younger and more focused on something like school, we have more reserves for a brain doing double duty. I don't have that luxury now, which may be why things are progressing and I was finally pushed to see a neurologist. Apparently, this isn't rare.
I had been thinking about my case as a "new(ish) onset" of seizures. Hmmm.
What an interesting day it has been.
Thursday, May 1, 2008
I'm So Dizzy, My Head Is Spinning
...literally.
"I am so dizzy, my head is spinning. Like a whirlpool, it never ends." (By the way, when my uncle JoFish and I both started singing this song once, G. had no idea what we were singing-- she'd never heard this classic, but I luuuuurve it.)
In my case, no, it is not YOU, girl. I think I am either coming down with something today, or this is an exacerbated case of one of my med's side effects.
No wonder the vestibular system is a hot topic in neuroscience right now (http://www.handle.org/). I can't think straight at all. I am fumbling all over the place, can't put a full sentence together. I feel like my brain is free-floating somewhere far away right now. M.'s vestibular system is possibly underdeveloped. I can see why this could make it challenging for him to track information.
Friday, April 11, 2008
When Your Normal Brain is Abnormal
I haven't posted pictures of my brain because I haven't figured out how to save the pictures from the disk onto the computer or even directly onto the blog. The images are viewed using a special program that is on the disk. Suggestions are welcome. The images are creepy and beautiful and amazing and wild all at the same time. I wish I could share them.
I talked with the nurse at my neurologist's office today, and she said the MRI results were normal. My response was disappointment. "That's discouraging," I told her, "Now I don't have any more answers."
I talked with the nurse at my neurologist's office today, and she said the MRI results were normal. My response was disappointment. "That's discouraging," I told her, "Now I don't have any more answers."
The neurologist warned me about this when we scheduled the MRI. She said something like 70% of abnormal EEGs (and I think she also said new onsets of seizures too) have no known cause. I was just hoping I'd be among the 30% for whom a cause could be determined. But instead, I am stuck with an f'ing NORMAL MRI, and I really don't know what I am supposed to do with that.
I want something not too serious but treatable (and definable)! I don't want to continue taking meds with a bunch of side effects if they only are based on a rough guess abut what is going on. Right now I think the meds could be making a difference, but it is so hard to tell with the accompanying fatigue.
What does one do when one's structurally normal brain is behaving in abnormal ways?
What does one do when one's structurally normal brain is behaving in abnormal ways?
I wouldn't feel so badly about the results if my neurological functioning didn't seem at all "degenerative" to me, if my quality of life wasn't declining in any way. I also might not feel so badly if I could think of more upsides to these particular problems. So on that note, here is my attempt to make light of a dark situation........
Top 10 Reasons Memory Loss, Unreliable Cognitive Functioning, and Funky Lack of Common Sense Are Awesome:
10. I've given up on trying to memorize anything.
9. I'm learning to be a very good note taker.
8. Being a good note taker means that I have quotes, written on paper, to back up my arguments when someone denies what they've said :-).
7. I don't look at the world like anyone else...I am very unique.
6. I don't feel obligated to talk to any particular near-strangers when I am out and about...I don't know if I know them.
5. Everyday I start fresh and new.
4. I don't worry as much about all those things I have to do...I don't remember that I have to do them (actually I worry MORE, but this is a top 10 list in good humor and I am supposed to be thinking positively).
3. Now there is a good reason people are calling me an oddball.
2. I don't remember a lot of stuff I wouldn't want to remember anyway.
1. When I am brilliant, I feel extra elation because it is so rare now.
Top 10 Reasons Memory Loss, Unreliable Cognitive Functioning, and Funky Lack of Common Sense Are Awesome:
10. I've given up on trying to memorize anything.
9. I'm learning to be a very good note taker.
8. Being a good note taker means that I have quotes, written on paper, to back up my arguments when someone denies what they've said :-).
7. I don't look at the world like anyone else...I am very unique.
6. I don't feel obligated to talk to any particular near-strangers when I am out and about...I don't know if I know them.
5. Everyday I start fresh and new.
4. I don't worry as much about all those things I have to do...I don't remember that I have to do them (actually I worry MORE, but this is a top 10 list in good humor and I am supposed to be thinking positively).
3. Now there is a good reason people are calling me an oddball.
2. I don't remember a lot of stuff I wouldn't want to remember anyway.
1. When I am brilliant, I feel extra elation because it is so rare now.
Thursday, March 20, 2008
The Last of My Autistic Allie Series...For Now
The following post is the final post for now from my series called "Journey of an Aspiring Allie." If you have just started reading, I hope you will go back and read the series in order. The first post of the series was on 1/27. The series is in the form of a guided video tour. It's just the way MY mind works.
I do also hope you will watch the videos exactly as posted in the text, as a break before reading further. I had attempted to learn to imbed videos in my posts but was unable to do so. Like recent posts in this series, this post contains a number of videos of varying lengths. I will wait a week or so to post again so that I can give folks time to get through all this.
I suspect that you may find it possible to get through this post only in parts, depending on how much time you have available to you at any given moment. __________________________________________________________
JOURNEY OF AN ASPIRING ALLIE, FINAL SERIES POST (FOR NOW)
So this is the deal:
This matters.
This post is about the difference that how we view and respond to neurological diversity makes.
There is a school in MA, the state where I am now living, that practices among other abuses, electric shock behavioral management on those children with "mental retardation," "autism," and other related "issues."
http://www.youtube.com/watch?v=HvLXwlr0S-U
http://www.youtube.com/watch?v=s9-xXfgQiTU
What types of behaviors are being managed in this fashion? The "worst of the worst?" If you don't have time to watch the whole video that follows, watch the first 2 minutes and fifty five seconds, so you get the context of what the video is talking about, and then the last part of the video, 8:20-9:59.
We're talking about electric shock for hand flapping, as an example. Yes, that is right. Shocking children when they flap their hands as they speak. The video clip at the end is directly from the school itself.
http://www.youtube.com/watch?v=ghheuvDQD2Q
Even non-autistic people occasionally flap their hands. Remember this video, featuring Bill Gates? http://www.youtube.com/watch?v=f15JexiQt4U Do we or do we not live in the 21st century?!
This is not an issue that can be isolated, however, to the abuses of just one school, an issue affecting a minority of children and individuals. This is a part of an ongoing but historic disregard for the humanity of individuals who do not conform to the "norm" and/or individuals with "disabilities."
The following is a video on the work of a man named Ivaar Lovaas. His story is one of a historical nature, but it continues to play out in our current times. Ivaar Lovaas pioneered an autism "treatment protocol," known as Applied Behavioral Analysis (ABA), that is still widely used and-- despite many controversies- very much considered "mainstream."
http://www.youtube.com/watch?v=SuohTq7zw0I
The breadth and scope of impact from this disregard for humanity can not be covered even in a series of posts. But what I can do is at least indicate the severity of the matter. This is where the pieces start to come together in a big way. Check out the following written tribute, largely highlighting DAN (Defeat Autism Now) from a magazine for which I have deep respect and for which I have even spent four or five years of my life volunteering. Note the connection between ABA and DAN: http://www.mothering.com/sections/news_bulletins/november2006.html.
I respectfully disagree with a great deal of the stuff written in that tribute.
On rare but significant occasion, children have died because of DAN-recommended treatment protocols (take chelation...a response to concerns that heavy metals in vaccines were causing autism). Children have been subjected to scientifically unsound or experimental and very stressful treatments (take, for example, medicinal regimens involving countless injected and oral supplements and medication...some children taking 40, 50, even 6o medications and supplements daily...along with all the side effects. Or, as another example, take hyperbaric oxygen chambers).
When I can stop crying long enough, I can sometimes laugh at the absurdity:
http://www.youtube.com/watch?v=XAlfXQTOBcg
After all this, one has to return to the question, just what is it we are trying to defeat, anyway? Far from a turn toward reason, this question leads straight to some of the most dark and frightening aspects of the entire conversation. The following video is a marketing tool for an organization called "Autism Speaks," which contrary to its name, is not the voice of autistics speaking out in any form (if you want to know why I say that, see: http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html and http://autism.about.com/b/2007/06/07/autism-speaks-problems-grow.htm and http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php. Otherwise, proceed to the video posted below).
Last I heard, unlike the largest Down Syndrome organization in the United States, Autism Speaks (which is the largest autism organization in the United States), does not allow autistic adults to serve on its board or participate in its organization in any meaningful way other than to present to the outside world a negative view of their condition.
http://www.youtube.com/watch?v=FDMMwG7RrFQ
Now watch this. It is, at least, the voice of one autistic adult:
http://www.youtube.com/watch?v=bYo3UW0nwEA
And think about this (image...not a video): http://autistics.org/images/lotto-numbers.jpg
But worse, while this video is a powerful marketing tool for Autism Speaks, it is devastation rhetoric (to which young people as well as parents of newly diagnosed children are especially vulnerable). It contributes to the pervasive negative societal images of autistics. It contributes to those conditions in our culture that create bullying and other peer-to-peer abuse for autistics. And within days after it came out, at least one autistic child was killed by her mother, possibly after viewing the video.
Autism is not a "painful disease" as it is characterized in this film. It is a condition that makes some neurotypical folks uncomfortable, but it also represents another way of being in this world. It is wonderful there are so many diverse ways we can be present in our bodies and in our environments. What are we so afraid of? Handflapping? Seriously?!
I ask again, what is it we are trying to defeat?
Am I anti-cure? I don't know. But I do know that it matters how we view autism. It matters for all of us.
I do also hope you will watch the videos exactly as posted in the text, as a break before reading further. I had attempted to learn to imbed videos in my posts but was unable to do so. Like recent posts in this series, this post contains a number of videos of varying lengths. I will wait a week or so to post again so that I can give folks time to get through all this.
I suspect that you may find it possible to get through this post only in parts, depending on how much time you have available to you at any given moment. __________________________________________________________
JOURNEY OF AN ASPIRING ALLIE, FINAL SERIES POST (FOR NOW)
So this is the deal:
This matters.
This post is about the difference that how we view and respond to neurological diversity makes.
There is a school in MA, the state where I am now living, that practices among other abuses, electric shock behavioral management on those children with "mental retardation," "autism," and other related "issues."
http://www.youtube.com/watch?v=HvLXwlr0S-U
http://www.youtube.com/watch?v=s9-xXfgQiTU
What types of behaviors are being managed in this fashion? The "worst of the worst?" If you don't have time to watch the whole video that follows, watch the first 2 minutes and fifty five seconds, so you get the context of what the video is talking about, and then the last part of the video, 8:20-9:59.
We're talking about electric shock for hand flapping, as an example. Yes, that is right. Shocking children when they flap their hands as they speak. The video clip at the end is directly from the school itself.
http://www.youtube.com/watch?v=ghheuvDQD2Q
Even non-autistic people occasionally flap their hands. Remember this video, featuring Bill Gates? http://www.youtube.com/watch?v=f15JexiQt4U Do we or do we not live in the 21st century?!
This is not an issue that can be isolated, however, to the abuses of just one school, an issue affecting a minority of children and individuals. This is a part of an ongoing but historic disregard for the humanity of individuals who do not conform to the "norm" and/or individuals with "disabilities."
The following is a video on the work of a man named Ivaar Lovaas. His story is one of a historical nature, but it continues to play out in our current times. Ivaar Lovaas pioneered an autism "treatment protocol," known as Applied Behavioral Analysis (ABA), that is still widely used and-- despite many controversies- very much considered "mainstream."
http://www.youtube.com/watch?v=SuohTq7zw0I
The breadth and scope of impact from this disregard for humanity can not be covered even in a series of posts. But what I can do is at least indicate the severity of the matter. This is where the pieces start to come together in a big way. Check out the following written tribute, largely highlighting DAN (Defeat Autism Now) from a magazine for which I have deep respect and for which I have even spent four or five years of my life volunteering. Note the connection between ABA and DAN: http://www.mothering.com/sections/news_bulletins/november2006.html.
I respectfully disagree with a great deal of the stuff written in that tribute.
On rare but significant occasion, children have died because of DAN-recommended treatment protocols (take chelation...a response to concerns that heavy metals in vaccines were causing autism). Children have been subjected to scientifically unsound or experimental and very stressful treatments (take, for example, medicinal regimens involving countless injected and oral supplements and medication...some children taking 40, 50, even 6o medications and supplements daily...along with all the side effects. Or, as another example, take hyperbaric oxygen chambers).
When I can stop crying long enough, I can sometimes laugh at the absurdity:
http://www.youtube.com/watch?v=XAlfXQTOBcg
After all this, one has to return to the question, just what is it we are trying to defeat, anyway? Far from a turn toward reason, this question leads straight to some of the most dark and frightening aspects of the entire conversation. The following video is a marketing tool for an organization called "Autism Speaks," which contrary to its name, is not the voice of autistics speaking out in any form (if you want to know why I say that, see: http://autisticbfh.blogspot.com/2008/01/autism-speaks-silences-autistic-child.html and http://autism.about.com/b/2007/06/07/autism-speaks-problems-grow.htm and http://www.autism-hub.co.uk/autism-speaks-dont-speak-for-me/index.php. Otherwise, proceed to the video posted below).
Last I heard, unlike the largest Down Syndrome organization in the United States, Autism Speaks (which is the largest autism organization in the United States), does not allow autistic adults to serve on its board or participate in its organization in any meaningful way other than to present to the outside world a negative view of their condition.
http://www.youtube.com/watch?v=FDMMwG7RrFQ
Now watch this. It is, at least, the voice of one autistic adult:
http://www.youtube.com/watch?v=bYo3UW0nwEA
And think about this (image...not a video): http://autistics.org/images/lotto-numbers.jpg
But worse, while this video is a powerful marketing tool for Autism Speaks, it is devastation rhetoric (to which young people as well as parents of newly diagnosed children are especially vulnerable). It contributes to the pervasive negative societal images of autistics. It contributes to those conditions in our culture that create bullying and other peer-to-peer abuse for autistics. And within days after it came out, at least one autistic child was killed by her mother, possibly after viewing the video.
Autism is not a "painful disease" as it is characterized in this film. It is a condition that makes some neurotypical folks uncomfortable, but it also represents another way of being in this world. It is wonderful there are so many diverse ways we can be present in our bodies and in our environments. What are we so afraid of? Handflapping? Seriously?!
I ask again, what is it we are trying to defeat?
Am I anti-cure? I don't know. But I do know that it matters how we view autism. It matters for all of us.
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